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It’s been so long since I’ve written, and I have much to share, but I’ll start with now, with today. The first email I opened today was from Jade Beall, saying her new book Bodies of Mothers, was being shipped, and had this photo of it fresh off the press.

Although I knew these gorgeous photos of Elizabeth (and me) would be in the book, it was a bit overwhelming still to see the reality. My emotions ranged from delight to deep sadness, for she’s in a book about mother’s bodies, but she didn’t get to be a mother herself, and I wish she were here in her body, dammit, instead of memorialized in this way. I had to laugh too, as I’m sure Elizabeth had something to do with this page being opened!

“The Bodies of Mothers – A Beautiful Bodies Project”

The next email was this blog post, from Tric, about the shocking and sudden death of the 24 year old son of her friend. More tears, and another reminder that “this day is the most precious thing possible”, as Elizabeth wrote while in high school. It is so easy to become complacent, to take it for granted that we can breathe, that our heart beats, that we can walk and see the ocean and mountains – which I’m fully enjoying every day, by the way, now that I’m living on Maui, which is a whole other day’s story…

One of my walks on Baldwin Beach, Maui

So I do my best to stay present. This is one of the greatest gifts I received in being with Elizabeth during her last two months of life. Noticing every time I started to play out a story in my mind, of what the future might look like without her, or what could have been different in the past, that I wasn’t being present with Elizabeth, in what I knew to be her last days here. There’s nothing like truly knowing that this moment is unique and finite, to bring us present in each moment.

Of course I struggle with this too, preferring at times to distract myself in various ways, from movies to Facebook or reading – being present in other people’s worlds, but not my own. When I do though, I usually notice, and do it consciously, giving myself permission to take a break. And then I come back, doing a quick meditation or really loving my dog, Tilly, and feeling her love for me, or going for a walk and appreciating the beauty around me with all my senses.

Next, I saw that the movie “Heaven Is For Real” was showing, so headed out to see it. I’d wanted to see it since seeing a preview months ago, as it’s about a 4 year old boy who has an experience of being in Heaven, and comes back with stories of people who died whom he’d never met or heard of. It was quite moving at times, and reinforced many stories I’ve read of people who’ve had near death experiences (though this boy doesn’t actually die, but somehow had a similar experience). It wasn’t great as a movie, but it’s worth seeing for the story of this little boy.

It helps me a great deal to learn of these experiences, such as Dr Eben Alexander’s “Proof of Heaven”, his story of spending a week in a deep coma, and coming back with clear memories of a wondrous, beautiful afterlife. He had previously not been spiritual, nor a believer in life after death, as he was a scientist who didn’t believe what he couldn’t see or touch. This experience completely changed his life, and many who’ve read his book. I’ve always believed there is life after death, and it’s comforting to have some validation, helping me to trust more deeply that Elizabeth is at peace, is doing a great deal of work on the other side, and is present with me, and with many who love her, bringing gifts and blessings to each of us.

Elizabeth has been so present with me these last couple of days, and I’ve been feeling this new wave of disbelief. As time goes by, it is easier to feel her spirit everywhere, it’s also harder to remember her in her body. I look at photos of her and still can’t comprehend that she was even here, and that now she’s not. It’s such a mystery, a profound mystery.

Elizabeth Blue, September 2, 2011

I was reminded again of her poem “Seeping Back” written at age 15, which speaks of this mystery and the eternal, beyond my comprehension, a good place to end for today:

“Devotion, my mysterious master
I saw the crossroads, one forever movement of light
Seeping back to the river of eternal life…

…I am waiting for our hearts to be conjoined in the endless breath
Why can we not meet at the simple movement, place of undying peace and satisfaction?
Whisper of eternity that says I love you
For if we were to meet in that place there would be nothing left to live for.”

I promised the link to my interview on NPR, and here it is: Voices for the Cure on Arizona Public Media. Mark McLemore was a wonderful, thoughtful and sensitive interviewer, and I’m so honored to have the opportunity to share more of Elizabeth’s and my journey with more people.

it’s your 24th birthday, and you’re not here, and you’re very much here. I didn’t know exactly how I wanted to spend the day, but I knew I wanted to do some ritual to honor you, and also something to nurture myself, some way of tending to my body – my “flesh and blood holder of humanity” as you wrote so eloquently.

Then a couple of days ago I saw someone announce on Facebook that she had an opening for an ayurvedic massage today, and that seemed perfect – it showed up and presented itself, so I said yes. Next I realized this was the day to take some of your ashes up to Mount Lemmon. I know you loved it there and it was the other place I knew I needed to leave some of your ashes before leaving Tucson.

First thing though, I shared one of my favorite poems of yours on FB, A Lifetime. It feels to me that it says so beautifully what you wanted to do, and what you did in this lifetime. It makes me happy to know you even thought about all of those things, and then that you got to experience it all…it’s quite extraordinary.

After my relaxing massage, I was ready to drive up the mountain. I packed up your bundle of hair, carefully wrapped in one of your scarves, and a shovel. I still had the hair you’d saved from when going through chemo the first time, and I know you’d intended to do some kind of burial ritual, so I wanted to complete that for you as well. I took some flowers, and then filled a small glass bottle with some of your ashes to offer to Mt Lemmon.

I drove up with Tilly beside me, wondering all the way where the hell we were going, and both of us were relieved when I found the right spot to bury your hair. Tilly was happy to walk around under the pine and oak trees, and I easily dug a spot for your hair in the soft ground, covered it with dirt and pine needles and put the flowers on top. It felt like there were bears nearby, maybe watching me, and I am certain they’ll come and sniff around at some point. I could feel their presence in the trees…

burial of Elizabeth’s hair

ashes on Mt Lemmon

I got back in my car and drove further up, looking for a place with the really incredible stacks of rocks. I asked you (and I’d been feeling your presence all day of course), where you wanted me to place the rest of the ashes – did you also love those rocks, or was I just imagining that, since I love them…? I heard you say that you do love them, and, to remember that where the ashes go is about what I want, that it no longer matters to you, you’re not in those ashes. You said that you love that I’m taking the time to do this ritual, but it’s for me, not for who you are now…I could also feel the ways that we were, and are, so merged. That there are times that I can’t tell whether it is I who likes or experiences something, or you.

I trusted that I’d just know, and sure enough, I saw those rocks, with a parking area, and with Tilly leading the way on her leash, I realized there’s a beautiful area to walk down and among the rocks. I’d been there before but somehow never saw that, even though there were many others walking down that way! I meandered down a path, down to where there was just the view of Tucson desert I’d been envisioning, and placed your ashes in the corner of some huge rocks. It was out of the wind, though I know not for long. And slightly off the main path, but there will be plenty of people coming through. Along with the immense natural beauty, there was also graffiti and cigarette butts, and it seemed the right place for some of your ashes to rest.

You were such a combination of the ethereal and very much of this world. When you were little, making up words and dances (like the “hatdeck” when you were 3, and fufia and kufia – were they unseen friends?), seeing spirits, writing poetry and loving the Spice Girls and Destiny’s Child. Now you seem to be truly at peace, in the angelic world of the ancestors, and yet, you come down and play Angel from Montgomery today on your birthday, which I haven’t heard in months! “To believe in this living, is just a hard way to go…” yes, sometimes it is.

So, my sweet girl, though I miss you deeply, and can still hardly believe you’re gone, I am mostly feeling at peace these days. I hear that you want me to be happy, and mostly I am, though I know it’s fine to be sad too, and that crying actually makes me happy at times. I was afraid that this second year, and now your second birthday after you died, would be harder, as some experience that. I’ve found thankfully, that it’s easier with time. I can feel your presence ever closer – almost merging, and yet further away, as you’re more diffuse, more spread out, though still very available when I need to connect.

I know that you know all of this, but I wanted to put it into words, to help me remember this day, and share it with others. You make my life so beautiful, along with your sister, and I’m so grateful!

love,Mom

Notice the orbs and the lights (including purple ones) that showed up in these photos.

One View

The View from Mt Lemmon, where Elizabeth’s ashes were placed – note the orb and lights!

I heard an excellent story on NPR the other day, about How Doctors Die, and how even though the majority of people in the U.S. say they want to die at home, surrounded by loved ones, less than half do and most die in the Intensive Care Unit (ICU). In Tucson, where I’ve lived the past 8 years, only 10% die at home. This is partly because when we are very sick, doctors are not likely to tell us the whole story, and we are not willing to ask the important questions – what are the implications of this treatment, what will be the quality of my life, how much time might this treatment add to my life, what are the risks and benefits…?

it reminded me of how difficult it was for the doctors to tell us what was really happening when Elizabeth was in the ICU. She’d had 2 chemo treatments when the lymphoma had spread to her brain, that had not shrunk the tumor. She’d had brain surgery to “debulk” the tumor, which had reduced the size of one tumor, though now we learned there were two in her brain, and probably more in her spine. The surgery had increased the swelling in her brain, necessitating a 2nd surgery to remove part of her skull, and then a stroke left her paralyzed except for her right arm and head. She was intubated, meaning she couldn’t speak, and it was so painful that she tried to pull the breathing tube out if her hands were free.

Elizabeth had told me clearly when going through her first chemo treatments: “Mom, I don’t want to go through years of treatment for cancer only to die of it. I don’t want to live like that.” I looked at her and I said “you won’t”, knowing somehow, that it was true, she would not.

But the doctors were still coming to the ICU each day and telling us she could go to rehab, learn to walk again, she’d need radiation to her brain, a different chemo drug…and I was a believer still, not yet seeing what was in front of me. Powerless, and still hopeful. Around the 6th night she was in the ICU, in the hallway, our favorite nurse said to me “I heard from your friend that you’re starting to talk about hospice.” I was shocked. That was the first time I’d heard the word used in relation to Elizabeth, and we had NOT started to talk about hospice! I was angry at her, felt violated and that she’d crossed some line. Only later was I incredibly grateful for the one brave woman who would dare speak the truth.

The next morning, after some time had allowed this idea to sink in, I asked the oncology team to tell us what was realistic. Did hospice make more sense than planning to continue treatment? Only then, when confronted, did they say yes, hospice was probably the way to go, that the treatments being discussed weren’t likely to be successful. They also passed it off to Elizabeth’s specialist, who had never come to the hospital, saying he’d have to talk to us for the final word. He came that day I think, and sat with me and Greg, and told us that she could try more chemo, or radiation, but it would likely only add days or weeks to her life and he didn’t recommend further treatment. There was no question in my mind that Elizabeth wouldn’t want that, and I didn’t want that for her either. All I wanted then was for her to come home, be out of the ICU, in a beautiful, peaceful place where we could care for her ourselves. Dr Miller also told us that if he let himself, he’d be sobbing along with us, but he couldn’t. That he wanted to be the hero who saved her, and he hated that this wasn’t the way the story was going to end. I know he didn’t want to be there either, having this conversation. No one wants to be the one to tell the parents of a 22 year old young woman that she will die soon.

We still had to fight hard to get her breathing tube removed, as she had a hard time passing their breathing test, though she was breathing on her own. The ICU doctor was afraid they’d have to intubate her again, if she didn’t have the strength to continue on her own. I knew she’d be fine, that she needed to get the breathing tube out, so we could take her home.

Elizabeth in the ICU

Finally, after days of promises and disappointments, they removed the tubes (partially because her dad had a rare, but necessary, blowup at the ICU doctor). She breathed fine, and she could speak again! I then told Elizabeth what Dr Miller had said, that there were no more treatments to try and she could come home. She looked at me and said, “I’m relieved.” I looked in her eyes and said, “I understand.” Elizabeth said, “I’m so glad you understand! I was afraid you wouldn’t.” I told her of course I understood, that she had done everything she could possibly do, and I just wanted her to come home where I could take care of her, and she wanted that too.

She’d had a feeding tube in, and as soon as her hands were free, she tried to pull it out. I explained that she might not be able to eat, as we didn’t know if she could swallow still, and asked if she understood what that meant. The doctors advised against it. She said yes, she wanted it out, and got it most of the way before a nurse could help her. Once that was done, and she wasn’t attached to the machines, we arranged quickly with hospice for a bed to be delivered to our home, and she came home the next day, after 10 days in the ICU.

Elizabeth at home in hospice

If that nurse hadn’t spoken up, if we had been compliant and unquestioning, if we didn’t have great family support, a friend who is a doctor…Elizabeth might well have lived her last weeks in the ICU, hooked up to LOUD, painful, machines, with ICU psychosis (an actual condition they acknowledge there) from bright lights 24 hours a day, nurses waking her up every few hours, not able to speak, eat, laugh or just be.

roses on the altar

As it happened, she came home and lived two more extraordinary months. The most beautiful, grace-full, love-filled times I’ve known. There was healing and completion in many relationships. Time with her sister. Visits and laughter with family and friends. Singing bowls played. Silence. Books read. Poetry listened to. Soft sheets. Daily massage. Cuddling. Favorite foods. Music of all sorts – from Graceful Passages, Beyonce, Ashanna and Wu-Tang Clan. Fresh roses and altars with sacred objects. Soft light, birds, flowering plants and trees outside the windows. We had time to talk of fear, of death, of love, of acceptance, of regret and loss, and joy and peace…It was so beautiful. And I am so blessed to have shared that time with her, and so immensely grateful it happened the way it did.

If I’m very lucky, I will die as she did (except for the Wu-Tang Clan), surrounded by love, being loved, and being Love.

Elizabeth and Lucia’s hands

Elizabeth with her Grandma, at home

I recommend filling out 5 Wishes, a living will written in plain language, that gives great options for how you might want to be treated if you can’t speak for yourself. Take some time to think about how you want to live and how you want to die…

When Elizabeth died, I was as well prepared as I could be. She had been at home, my home, in hospice care for almost two months, and I was able to be with her that entire time, letting go of almost everything else for that time. It was heartbreakingly sad and breathtakingly beautiful – the grace and love of Elizabeth’s Presence was immense. She was in a state of egolessness. She no longer cared how she looked, she had no anger, almost no fear or sadness – none by the end, and she was radiant in love.

We knew she was dying, and we had time to prepare ourselves emotionally, and also in practical ways. We are blessed that our close friend Victoria, Elizabeth’s godmother, had recently taken a training in home funerals, and found an amazing woman here who also supports families in taking care of the bodies of their loved ones. I hadn’t known this was an option before, and am so grateful that we didn’t have to send her body off to be tended to by strangers. Kristine Bentz, of Sweetgrass Ceremonies met with us – Elizabeth, me, and our close family, a few times, to let us know what our options were and listen to our hearts.

Elizabeth left her body around 4:30 on a Sunday morning, September 23, 2012. My sister had had the amazing foresight to arrive the night before (though scheduled to arrive several days later), so she was there, and after some time of sitting with Elizabeth, I must have woken her up, and began calling and texting family to let them know. I wanted our family to have that day to be with her body. The next day was for others who wanted to come and visit. Tashe and I did a ritual bathing of her body: cleaning her, touching her skin one last time, anointing her with precious essential oils, then dressing her in a brand new, simple white long dress that was the last piece of clothing Elizabeth had bought herself, not consciously knowing she’d wear it to be cremated in. We then placed beautiful flowing sheer fabrics under, around and over her. We placed her body on a massage table that Kristine had brought us, and used dry ice under her torso to keep her cool, so she could be at home for a couple of days. Finally, we showered her in rose petals…

Her toes…

Elizabeth Blue’s body at home, 9/23/12

Elizabeth Blue’s body at home, 9/23/12

Making offerings…9/23/12

I almost forgot to include some of the practical details, as I was spared from dealing with the outside world right away. Kristine helped to guide Elizabeth’s father through the process of becoming the “funeral director” which involved filing some paperwork at City Hall, which allowed us to then transport her body ourselves for cremation. We could have had them come to transport her body, but it just felt right to us to do the whole process ourselves.

The funeral parlor (if that is what they’re still called) provided a simple cardboard casket which Kristine brought us, that we asked friends to decorate with messages and artwork, and we placed some of Elizabeth’s belongings in with her, along with many rose petals. The day of the cremation, our family said our last goodbyes to her at home. It was so hard to know that I’d never touch her skin again, very hard to let go…And then we brought her to the crematorium, where we were able to gather and watch as they placed her body inside the crematory. I didn’t think I’d want to do that when she was still alive, but when it came time, it felt better to be there . I knew then that it was not Elizabeth going into that fire, but an empty vessel – as she said, her “flesh and blood holder of humanity” had ceased to exist…

Here is the email I sent after the home funeral, about the cremation and as we began to prepare for a larger, public memorial and celebration of life:

September 26, 2012

Dear Ones,

Yesterday was very difficult, and beautiful. We gathered with close family and said our last goodbyes to Elizabeth’s body at home, placing her body into the casket, which had been decorated by friends and family, and putting her baby blanket (Silky) and some flowers in with her, to help her make the transition. We transported her body and were able to support each other and witness the box being placed in the crematory. I didn’t know if I’d want or be able to witness this, but I am grateful that I could be present, in the way that seeing a burial might also bring some sense of completion.

We had a lovely open house the day before, with many friends coming by with flowers, love, tears, laughter and stories. It was good to be with others who love Elizabeth. Thank you so much to those of you who were able to be here.

We have confirmed the date and location for Elizabeth’s Celebration of Life/Memorial Service. It will not be a religious ceremony, but one that represents Elizabeth’s diverse and deep spiritual beliefs and an opportunity to gather, celebrate her life, tell stories, share images, music, ritual, and more.
with much love,

“Death is not a separation but a different form of communion, a higher form of connectedness with the community, providing an opportunity for even greater service.” ~ Malidoma Somé

I’ve not written here for a long while, and I’ve been missing it, but also dreading it, for a few reasons. One is that I want to write about Elizabeth’s death, and how we cared for her body, and that has felt difficult to begin. Another reason is that I’ve been afraid of “running out” of Elizabeth’s writing to share, as it is a finite source. Though there is an abundance of her essays and poems still unearthed, some part of me feels that she will die again once all of her writing has been shared here…I feel a need to savor each piece. And I know there is no hurry from all of you, but there is an internal message to continue, and when I ignore it, it gets louder and creates more tension, so I am listening.

And last, I’ve been very busy, as I’ve been getting my home ready to sell, and planning to move to Hawai’i. I’ve known for a long time that I would be leaving Tucson, but didn’t know when, or where to. During the first year after Elizabeth died it became clear that the time was approaching, but that I needed to stay here, in the city that she loved, and in the home where she last breathed, at least until the one year anniversary of her passage. First though, I had a revelation – I realized that some part of me believed that if I left here permanently, Elizabeth wouldn’t be able to find me. Now, I know that she is with me wherever I go, and she lets me know that she’s with me often, answering questions when I ask, and showing me signs that are clear it’s her presence. This felt like something else. I’m not entirely sure about past lives, but this felt like it was from another lifetime, a long-ago memory that surfaced: that of being a mother in a home that had been under attack, perhaps had been bombed, and it was time to leave or else risk dying myself. But in this memory, my child had left the house, and I was afraid that if I left, she or he would never be able to find me again, and would be in great danger and feel abandoned. It is still a vivid “body memory” and moves me to tears, and it feels like possibly a past life that Elizabeth and I shared. Once I realized that some part of me was carrying this belief, it started to loosen its grip, and I knew that I could leave this home, and not be abandoning my child.

So a couple of weeks before the one year anniversary, it became clear that the time has arrived for me to move to Hawai’i, and that there is great energetic support at this time. (This has been discussed for years, as my partner is from Hawai’i, and we’ve spent a lot of time there, as it is where we have a second home and offer our spiritual retreats.) Once the anniversary date passed, on September 23 (and that is another post!), I set a date to put my house for sale, and started readying it. This meant giving away anything that I wouldn’t be taking or putting in storage, and putting away most personal photos and spiritual images – and there were a lot! I did it in stages, and it was many-layered. Each round I’d think I was done, and then realize there was a whole other layer to clear… I’d had an altar set up for Elizabeth since she came home from the hospital into hospice, that now held her ashes, along with some of her most precious belongings, things from her altar at her home, gifts from friends and family, and several photos of her. I knew that I could leave it up, but over several weeks it seemed to take itself apart, bit by bit, until I realized that it was no longer needed at all. She is with me always – sometimes so close I can’t believe she’s gone, and at the same time farther away, my memories less vivid, my sense of her presence as more diffuse…

One Year Anniversary Altar – 9/23/13

One of the ways Elizabeth sends me messages is through music. In my recent busyness, I find that my grief is present less often, but emerges from a deep well of emotion. When I’m alone, and quiet, and still, it emerges, often from a connection to Elizabeth through music or an image. I listen to Pandora, with about 25 stations on shuffle, including a wide variety of musicians. Every once in a while, when I’m missing Elizabeth to the core of my being, and talking to her, asking how is it possible that she’s not here anymore, and a song will come on. A few songs in particular: Here Comes the Sun, and Angel from Montgomery are two – songs that I know Elizabeth loved and that she knew were my favorites as well, and I am brought to my knees, with sadness, gratitude, and joy, as I feel her letting me know she is there, seeing me, connecting with me, and comforting me.

The Enormity of it All

Lucia Maya and Elizabeth Blue, April, 2012. photo by Jade Beall

Yesterday I was having lunch with a dear friend, who is very insightful and intuitive, and has two sons the same ages as my two daughters. She asked me, with concern, for the second time in two weeks, if I was really taking the time and space to allow for the enormity of what has happened. It felt like she was asking if I truly grasped the magnitude of what has happened to me, my daughter’s death a year ago. I didn’t really know how to answer her and I still don’t.

On the one hand, I started to feel like maybe I wasn’t doing this grieving “right”, which I’m sure was far from what she intended. As a mother, it’s such a familiar place to go: if this looks different, or is not what is expected by others, maybe I’m not doing it right. Though much of my mothering has looked “different” (as is how I live my life), and I can see things I could have done better, overall I’ve mothered the best way I know how, following my heart and modeling that for my daughters. Still, it’s easy to be vulnerable as a parent, to question if we’re doing the right thing. Guilt seems to come along with parenthood and the enormous responsibilities we’re honored with in bringing someone into the world.

What I said to my friend is that I feel like my main work now is healing through grieving, and taking the time to heal in whatever ways I can. For me, this means a lot of time alone, listening to music where I often receive messages from Elizabeth, meditating, reading, watching tv on netflix for hours when I need to (all of “Orange is the New Black” during 2 really hard days). It means getting acupuncture and bodywork, talking to good friends, asking family to be around for difficult times, like birthdays and anniversaries, asking for support…It means saying no to many invitations and events, listening deeply to what I really want to do, and leaving when I’m tired and feeling full. It means spending time with my younger daughter, visiting her more often, connecting with her and wanting to be closer with her.

It also means seeing clients, offering the healing work I do, which I love – it helps me to focus on someone else, listening with my full presence, feeling like I’m in service and contributing, and it makes me feel better as I receive the Reiki as it flows through me to my client. Teaching Reiki and facilitating healing circles and retreats also brings me joy, and is another way that I feel Elizabeth’s presence, sitting with me and supporting me, as I ask to be the clearest channel for the teachings to flow through. It also allows me the opportunity to share some of what I learned from Elizabeth about living and dying with grace, which helps bring some greater meaning to this intense journey of transformation.

It means writing, combing through my emails and journals, Elizabeth’s writing and photographs, and sharing these with all of you, listening for the guidance about the timing. Receiving feedback about how this affects you has been an amazing balm for my heart.

But, am I able to absorb the enormity of what has happened, that my adored and beloved and challenging and worrisome and beautiful and smart and difficult and adoring and creative and wise 22 year old first-born daughter has died? No, absolutely not. Do I cry as I write these words? yes. There is no way I could absorb or take in all of this, even one year later it continues to seep in, little by little, day by day, and I do my best to stay present to it, to grief, stay present to Elizabeth’s spirit, stay present to my living daughter, Julianna, stay present to my partner, and mostly, stay present to my heart.